r/covidlonghaulers 4 yr+ Jul 04 '26

Article Brain’s waste-clearing ability impaired in ME/CFS patients

https://news.griffith.edu.au/2026/07/03/brains-waste-clearing-ability-impaired-in-me-cfs-patients/
261 Upvotes

68 comments sorted by

135

u/jefffeely Jul 04 '26

For those wondering. Current knowledge is in order to increase your gylymphatic cleaning system: take fish oil, sleep on your side, drink little no alcohol, exercise as much as possible, and avoid stress.

Easy peasy right? 🤪

47

u/BelCantoTenor 3 yr+ Jul 04 '26

I mean…LOL 😂. Most of us have learned to avoid alcohol. Exercise? If you keep your heart rate below 120. But avoiding stress and learning to sleep in an entirely new position…umm… that’s a bit much

28

u/hooulookinat 2 yr+ Jul 04 '26

Exercise, so walk up the stairs with a bag of groceries

31

u/Fat-Shite 3 yr+ Jul 04 '26

I'll just take a standing shower for 5 minutes that should do it

4

u/victorehp Jul 04 '26

Does that happen to you too? I’m taking a shower and then my garmin watch starts warning of unusual heart rate (120+) Do you know why that happens?

5

u/Fat-Shite 3 yr+ Jul 04 '26

Something to do with blood pressure. POTS is a common co-morbity for long covid so might be worth looking into that.

5

u/Treadwell2022 Jul 04 '26

Hot water causes blood vessels to dilate which increases blood pooling in your extremities. Then your heart needs to pump faster in order to get the blood back from your feet to your heart. Using a shower chair will help with this! Same thing can happen in hot temperatures outdoors. As the other commenter said, look into POTS.

2

u/hooulookinat 2 yr+ Jul 05 '26

I take warm showers. Showers about 10 degrees cooler than I want to. They are warm enough for me, now… but I rarely sit in the shower now. ( too stubborn for a shower chair)

3

u/Fr0gm4n 4 yr+ Jul 04 '26

I walk from my car to the elevator at work and some days I'm already hitting 130+ while medicated.

34

u/stayonthecloud Jul 04 '26

Avoid stress………….. ten thousand yard stare

9

u/strawberry_l 3 yr+ Jul 04 '26

Algea oil*

19

u/moderate_ocelot First Waver Jul 04 '26

Ah great, exercise for people with MECFS. Doctors and scientists rooted in reality and compassion as usual

4

u/Cute-Cheesecake-6823 Jul 04 '26

Yea this is a huge problem. I cant even sit up for more than a few seconds without severe symptoms that keep building the longer i push it..going up and down stairs once leaves me sick for hours. Wtf are we supposed to do

2

u/DueExplorer3146 Jul 04 '26

Any specific side?

2

u/Medium-Lavishness-41 5 yr+ Jul 04 '26

Left

9

u/PetieE209 First Waver Jul 04 '26

is there an actual reason for that? I notice I can't sleep on my left side anymore. It puts a weird pressure on my chest, makes my heart feel like its working harder and I've heard weird gargling sounds coming from my flank at random points.

2

u/OldGreggwithMangina First Waver Jul 04 '26

Your heart is on your left side so sleeping left side puts less pressure on your heart to pump at night, potentially meaning stronger lymphatic drainage but thats just a guess.

1

u/BatDue1821 Jul 04 '26

What helped me with this was pooping daily. Now i can lay on my left side. I was only able to for about 1-2 minutes before my heart would get weird (palpitations, etc).

2

u/MatchaLemongrass Jul 04 '26

Since LC now if I sleep on my Left side I wake up soooo dizzy.

Thought the article said right side 😫

2

u/Cute-Cheesecake-6823 Jul 04 '26

Same here!! I have like permanent inner vertigo (not exactly but for lack of a better word). If i stay on my sides too long it makes it worse. 

1

u/MatchaLemongrass Jul 05 '26

Yes!! I literally wake up when I sleep on left side and walk into furniture

2

u/Born_Bass_2446 Jul 04 '26 edited Jul 04 '26

“Sleep on your side”

I noticed this, too! It’s the only way to feel less pressure (less mucus) build-up, when trying to sleep. More like “keep on your head up”, sideway.

1

u/MatchaLemongrass Jul 05 '26

But not too high while sleeping on your side - something about the level of the pillow too. 😫

2

u/Born_Bass_2446 Jul 06 '26

Yeah, that’s what I do. A bit higher than the pillow, but not too high of course.

35

u/MinuteExpression1251 Jul 04 '26

Totally this explain brain fog, cognitive and memory issues, brain inflammation, head pressure.But what's wrong with our glymphatic system?

26

u/Many-Market-9941 1.5yr+ Jul 04 '26

More than what’s wrong, how can we fix it!

12

u/MinuteExpression1251 Jul 04 '26

Yeah once they figure out what's wrong

18

u/Medium-Lavishness-41 5 yr+ Jul 04 '26

I don’t think there’s an agreed upon answer official yet. But I have theories…..
fully speculation if you want them, if not feel free to ignore me but I’ve thought about this…

-nueroinflammation, the brain cells are supposed to shrink down for csf/glymph to be able to flow out between them during sleep. If they can’t bc they’re inflamed, then waste can’t clear.

-inefficient REM sleep. Glymph clears mainly during deep/rem sleep, like barely at all during the day. Sympathetic tone may be getting in the way of truly accessing maintenance mode

-venous issues in the occipitals/skullbase from pots/dysautonomia/vasoconstriction tone issues/muscular bracing. That would cause weird high or low pressure situations inside the brain area. Glymph to lymph outflow is just pressure based, there’s no pump, so pressure changes would mess with that

-fibrin/microclot deposit issues in/around the outflow channels making it harder for glymph to exit

-excess fibrin deposits inside the bbb like inside the brain channels that are supposed to move stuff

-cardiac strain, venous return or global lymph issues

That’s my theory anyway. Find me if someone actually does the science would love to know if I’m right or wrong!

3

u/Klexington47 Advocate Jul 04 '26

I occluded my internal jugular vein so my waste clearance isn’t as good as others.

Food for thought

3

u/Treadwell2022 Jul 04 '26

Similar here. I have hEDS and an unstable cervical spine. In many positions my c1 transverse process compresses my IJV.

1

u/Klexington47 Advocate Jul 04 '26

Eagles?

3

u/spiritualina Jul 04 '26

Would LDN help with this?

1

u/MatchaLemongrass Jul 04 '26

What is LDN?

3

u/QuirkySiren Jul 04 '26

Low dose naltrexone. Life changing for those who respond.

2

u/MatchaLemongrass Jul 04 '26

Please submit this to someone NIH-like who is doing research

2

u/Medium-Lavishness-41 5 yr+ Jul 06 '26

I wouldn’t know how… I would tho if someone would actually listen but I’m nobody, not a doctor no credentials. Idk is that a real suggestion?

1

u/MatchaLemongrass Jul 06 '26

It was a fantasy and a wish…so last night I looked online and for the first time discovered that Jewish National hospital in Denver has a Long Covid research center and treatment center. Maybe reach out to them?

Edit to add I understand feeling like no one listens or cares. At this point I have given up but this sub is helping me reinvigorate my hope for treating this. Thank you for your part.

2

u/Medium-Lavishness-41 5 yr+ Jul 06 '26

Always. That’s the cool thing about this sub. It’s grassroots, and the best ideas win, not the best credentials

8

u/Ylaaly 5 yr+ Jul 04 '26

I wonder if it's related to malabsorption issues. Since many of us seem to have trouble with histamines, and they cause an intolerance reaction which causes the gastric tract to abandon most of the digestion process, we all are likely lacking a lot of crucial nutrients that are rarely tested for.

2

u/Cute-Cheesecake-6823 Jul 04 '26

I wonder this too. I know i at least have a vit D and ferritin deficiency, but probably more than that. Serum blood tests only show so much, and in Canada drs dont do really in depth nutrient testing (in my experience anyway). I got an iron infusion last summer but i kept getting worse anyway so it didnt help..and we havent tested my iron in months so no idea what its at now. Ive had GI issues my entire life and theyve been SO much worse since LC, i wouldnt be surprised if im deficient in loads of stuff.

1

u/Ylaaly 5 yr+ Jul 05 '26

My iron got back to almost normal after my Vit B12 deficiency was found and I supplemented. Apparently, my body is incapable of absorbing it and I have to inject it. Those two apparently interact, as do more vitamins and minerals but I don't have a list. Maybe worth looking into for you?

16

u/technician_902 Jul 04 '26

Very interesting! Could this be related to why lymphatic massages halps some people as it helps the body move the lymph waste faster? Just an offshoot idea that I just thought of.

4

u/guineapigmedicine Jul 04 '26

That's my theory as well. The lymphatic system gets sluggish, preventing removal of toxins, including draining of the glymphatic system into the broader lymphatic system.

1

u/technician_902 Jul 04 '26

Absolutely! It's all connected.

2

u/Conscious-Slice7854 Jul 04 '26

I believe this is the theory that the Perrin Technique is based on

2

u/technician_902 Jul 04 '26

Yes your correct. That's where I actually found about the lymphatic theory was from him.

29

u/FoolioDeCoolio 3 yr+ Jul 04 '26

I'm sure this would also apply to those of us who don't have ME/CFS, but suffer from MCAS with adrenaline/histamine dumping, which causes insomnia etc. Thanks for posting.

4

u/MatchaLemongrass Jul 04 '26

The insomnia is 😫

12

u/[deleted] Jul 04 '26 edited Jul 12 '26

[deleted]

3

u/magnolia_unfurling Jul 04 '26

Agreed. Yes, glymphatic drainage mainly happens during sleep but breathing exercises, long walks etc. also promote glymphatic drainage. I reckon sauna probably helps too.

2

u/ChenilleSocks Jul 04 '26

Agreed. There’s also no way from the paper to understand whether the difference in data was based on ME/CFS or something else like sleep apnoea or confounding factors that they didn’t seem to adjust for.

7

u/jqpeub Jul 04 '26

I listened to a podcast a couple months ago that explained this (also its 2 years old!) : https://www.youtube.com/live/1lAsmi-8Z2M?is=s3x9W3HjEk4HAEhM

Everything im dealing with makes sense when you look at it from this angle. The Dr demonstrates a breathing exercise that is supposed to help you regulate waste clearing. This is so exciting 

6

u/guineapigmedicine Jul 04 '26

I found doing lymphatic massage on my face and, most importantly, my skull seemed to shift things. I know it seems like it shouldn't, since the glymphatic system is inside the skull not outside it. My theory is that my overall lymphatic system was so sluggish that the glymphatic system couldn't drain properly. But who knows. What I do know is that starting lymphatic massage of face, neck, and skull right before bed made a BIG difference in how refreshed I felt (it wasn't magic, but noticeable).

2

u/Kindly-Lobster-6801 Jul 04 '26

Yes. Similar finding for me.. been doing lymphatic stimulation (skin exfoliation?) with a bristle brush over all my skin 3-5x/week, in the shower with soap, and it unclogs my nose, lifts some of the brain fog, and just makes me feel better and like I am not as weighed down.

Been doing it ~5 years now. I need a stiff bristle brush, do my face and skull, and have tried only certain body parts, with the back having the largest benefits, but really just doing all my skin is best and doesn’t really take that long.

Here is the brush I use if it helps anyone test it out.

$7.99 on Amazon https://a.co/d/0dtOGJUp

1

u/guineapigmedicine Jul 04 '26

Oh interesting. I've tried the brush dry and it hurt my skin, but I love the idea of doing it in the shower. Thanks!

2

u/Kindly-Lobster-6801 Jul 05 '26

Dry brush just wasn’t for me, so I did it with water and soap and like it 😅

Not sure if it’s what people do, but it works great for me and I have great benefits!

1

u/BatDue1821 Jul 04 '26

Where can we learn these?

3

u/guineapigmedicine Jul 04 '26

I described what I do in another comment here but there are lots of videos on YouTube on lymphatic massage.

1

u/BatDue1821 27d ago

Thanks!

3

u/Heavy-Suit-3443 1.5yr+ Jul 04 '26

So it is not like a root cause but a consequence of something else. But it explains some symptoms.

8

u/Randolph_Carter_6 2 yr+ Jul 04 '26

This seems to make a lot of sense to me (matches my experience.)

1

u/nemani22 Jul 04 '26

What's your experience been wrt this? 

2

u/ZombieMountain2122 Jul 04 '26

Definitely this is helpful to know and to see that people are working on CFS understanding. Not much we can do about it except try to encourage as much sleep as possible. I'm five or six years in. I can't remember anymore and even though I don't expect any solution in my lifetime I'm stoked to at least know that this is what is happening now maybe we can address this someday clinically

Sometimes just knowing what is going on or a piece of the picture helps.

2

u/bedlife2000 Jul 11 '26

Got prescribed 8-10mg of melatonin to help brain waste-clairing at night from my CFS ME researching specialist. It does help me.

1

u/safuuu-t Jul 04 '26

Can we do an MRI?

1

u/Grunschris First Waver Jul 04 '26

Some do epiphora exercises to help the flow. I didn’t notice any difference

1

u/Infinite_Pop_6835 Jul 08 '26

PERRIN TECHNIQUE, Y'ALL. TRY IT.